How do knowledge and attitudes about #stemcells and biobanks vary with race and ethnicity? Recent research provides a foundation to create demographically diverse #biobanks, an important foundation for building #HealthEquity 

Stem cell biobanks have few samples from minorities for genomic studies. We conducted an online survey to understand knowledge and attitudes toward stem cell biobanks and technologies. Overall, we learned that White race was associated with the greatest knowledge about stem cell biobanks and willingness to contribute tissue samples for biobanks. More education is required so that minorities are willing to contribute tissue samples toward stem cell biobanks. This will help researchers study the genomic bases of disease and pursue translational research toward addressing health inequities.

This study aimed to determine knowledge and attitudes toward induced pluripotent stem cell technology and biobanking.  A survey instrument was developed to determine individuals' knowledge of and attitudes toward these technologies. Results from 276 ethnically diverse participants who took the online survey demonstrated significant associations (p ≤ 0. 05) in knowledge by ethnicity and race regarding properties of stem cells, different types of stem cells and previous sample donation behavior. Significantly more Whites 39% (n = 53) compared with Blacks or African-Americans 19.2% (n = 14) had previous knowledge of induced pluripotent stem cells (χ2 = 8.544; p = 0.003). Overall, White race was associated with greater knowledge about stem cells and biobanks and greater willingness to donate samples for future research.

Fakunle ES, Pratola VG, Peterson SE, Loring JF, Madanat H. The Promoting Equity in Stem Cell Genomics Survey. Regen Med. 2022 Apr;17(4):203-218.

Induced pluripotent stem cells (iPSCs) are a great source towards the development of cell therapy to treat a wide range of ailments, including heart disease, sickle cell disease and Alzheimer’s. However,  for people of diverse ethnic groups, including Black race or African American ancestry to benefit, people in these groups need to donate more biological samples for research and biobanks.                                                                                                                                                                   

It is important to have ethnically diverse iPSCs  available for research and biobanks. This is because genetic variations can affect the safety and efficacy of iPSC-based therapies, and a diverse range of samples will help to ensure that therapies are effective for all populations.

One path to improvement is to increase awareness and understanding of the types and properties of stem cells among underrepresented minorities. This can be done through community education, and engagement programs that aim to increase awareness of the potential benefits of stem cell research and biobanking, and address any concerns or mistrust that may exist among these groups.  Another way to improve is to increase the representation and participation of underrepresented minorities in stem cell research and biobanking. This can be done through targeted recruitment efforts and by providing resources and support for individuals from these groups to participate in research.  Additionally, it's essential to ensure that the informed consent process for stem cell research and biobanking is culturally sensitive and inclusive, to ensure that individuals from different racial and ethnic groups fully understand the implications and potential benefits of participating in the research.

Overall, better communication, education, and representation of diverse ethnic groups in stem cell research and biobanking can help to ensure that the potential benefits of iPSC-based therapies are accessible to all populations.

 A survey of 276 racially diverse respondents showed differences in knowledge and attitudes about stem cells.                                                                                                                                     

Stem cell biobanks have few samples from minorities for genomic studies. We conducted an online survey to understand knowledge and attitudes toward stem cell biobanks and technologies. Overall, we learned that White race was associated with the greatest knowledge about stem cell biobanks and willingness to contribute tissue samples for biobanks. More education is required so that minorities are willing to contribute tissue samples toward stem cell biobanks. This will help researchers study the genomic bases of disease and pursue translational research toward addressing health inequities.

Fakunle ES, Pratola VG, Peterson SE, Loring JF, Madanat H. The Promoting Equity in Stem Cell Genomics Survey. Regen Med. 2022 Apr;17(4):203-218.

Dozens of clinical trials are underway using induced pluripotent stem cells (iPSCs).                                                                                                      

Induced pluripotent stem cells (iPSCs) have the potential to be used in a variety of clinical applications, such as regenerative medicine, drug discovery and development, and disease modeling. Some of the areas where iPSCs are being studied in clinical trials include:

· Cardiovascular disease: iPSCs are being studied for the treatment of heart disease, such as myocardial infarction, by generating heart muscle cells for transplantation.

· Neurological disorders: iPSCs are being studied for the treatment of neurodegenerative disorders, such as Parkinson's disease and Huntington's disease, by generating healthy replacement cells for the brain and spinal cord.

· Blood disorders: iPSCs are being studied for the treatment of blood disorders, such as sickle cell anemia and thalassemia, by generating healthy replacement blood cells.

· Diabetes: iPSCs are being studied for the treatment of diabetes by generating insulin-producing cells for transplantation.

Check clinicaltrials.gov to find the most recent and updated information about the ongoing iPSCs clinical trials.

Induced pluripotent stem cells (iPSCs) can be the source of various cell types. In turn, iPSCs can be derived from multiple sources, including umbilical cord blood, bone marrow, skin, blood and urine.                                                                                              

Sources 

Induced pluripotent stem cells (iPSCs) can be generated from adult cells, such as skin or blood cells, by introducing specific genes that reprogram the cells to a pluripotent state. This means that they can give rise to any cell type in the body. Once generated, iPSCs can be differentiated into various cell types, such as neurons, muscle cells, or heart cells, which can be used for research and therapeutic purposes.

iPSCs can be derived from multiple sources, including:

· Umbilical cord blood: Umbilical cord blood is a rich source of hematopoietic stem cells, which can be reprogrammed into iPSCs.

· Bone marrow: Bone marrow contains hematopoietic stem cells, which can also be reprogrammed into iPSCs.

· Skin: Fibroblasts, a type of cell found in the skin, can be reprogrammed into iPSCs

· Blood: White blood cells, such as T cells and B cells, can be reprogrammed into iPSCs.

· Urine: Urine contains a variety of cell types, including urothelial cells, which can be reprogrammed into iPSCs.

· Hair: Keratinocytes on the outer root sheath of hair can be reprogrammed into iPSCs.

It's important to mention that the choice of the source of cells to reprogram, will depend on the research or therapeutic goal and the availability of the cells.

Attitudes towards stem cells and iPSC donation can vary greatly among individuals and may depend on factors such as religious or moral beliefs, and concerns about privacy, security and the use of the cells.

Research has shown that certain racial and ethnic groups may have lower levels of knowledge about iPSCs and biobanking and may be less likely to donate samples for research. Additionally, mistrust and skepticism towards researchers and biobanking may exist among some groups due to historical examples of exploitation and mistreatment such as the Tuskegee syphilis study.

To increase representation and participation of underrepresented minorities in iPSC research, it's important to increase awareness and understanding about the types and properties of iPSCs among underrepresented minorities and to address concerns and mistrust that may exist. This can be done through community education and engagement programs and by providing resources and support for individuals from these groups to participate in research and biobanking.

It's also important to ensure that the informed consent process for iPSC research and biobanking is culturally sensitive and inclusive, to ensure that individuals from different racial and ethnic groups fully understand the implications and potential benefits of participating in the research.

In summary, it's essential to consider the attitudes and perceptions of diverse populations towards iPSC donation and to take steps to address any disparities in knowledge and participation to ensure that the potential benefits of iPSC-based therapies are accessible to all populations.

Learn more: 

Fakunle ES, Pratola VG, Peterson SE, Loring JF, Madanat H. The Promoting Equity in Stem Cell Genomics Survey. Regen Med. 2022 Apr;17(4):203-218.

The National Institute of General Medical Sciences defines pharmacogenomics as "a field of research that studies how a person's genes affect how they respond to medications. Its long-term goal is to help doctors select the drugs and doses best suited for each person." Learn more about pharmacogenomics. 

The Promoting Equity in Stem Cell Genomics Survey is a  published survey research study that evaluated diverse participants' attitudes about various topics, including biobanking, induced pluripotent stem cells, and pharmacogenomics.                                    

Pharmacogenomics 

Pharmacogenomics is the study of how a person's genetic makeup affects their response to medication.  This is important because different people can have varying reactions to the same medication and understanding the genetic basis of these differences can help tailor treatment to the individual. Pharmacogenomics aims to help doctors select the most effective and safest drugs and dosages for everyone based on their genetic makeup.

Resources 

PharmGKB 

Pharmacogenomics Global Research Network — Pharmacogenomics Global Research Network

Population Research — Genomics & Precision Health, Centers for Disease Control and Prevention (CDC)

National Human Genome Research Institute- GenomeEd Resources 

Individuals of African ancestry are a diverse group underrepresented in genomics studies. Their greater participation will be integral to yielding new insights into human biology and advances in clinical treatment.

The Promoting Equity in Stem Cell Genomics Survey is a  published survey research study that evaluated diverse participants' attitudes about various topics, including biobanking, induced pluripotent stem cells, pharmacogenomics  and global health.                                    

Individuals of African ancestry are a diverse group that have been underrepresented in genomics studies, which has led to a lack of knowledge about the genetic variation and disease susceptibility in these populations. Therefore, their greater participation in genomics studies is essential to yield new insights into human biology and to advance clinical treatment.

One of the challenges in increasing participation of African individuals in genomics studies is addressing concerns and mistrust that may exist among these groups due to historical examples of exploitation and mistreatment. Addressing these concerns and mistrust can be done through community education and engagement programs and by providing resources and support for individuals from these groups to participate in research.

Another way to increase participation is by increasing representation of African scientists and institutions in international genetic research, and by building capacity in genetics and genomics research in Africa. This can be achieved through collaborative initiatives such as Human Heredity and Health in Africa (H3Africa), which aims to increase the participation of African scientists and institutions in international genetic research, and to build capacity in genetics and genomics research in Africa.

In addition, it is important to ensure that the informed consent process for genomics research is culturally sensitive and inclusive, to ensure that individuals from different racial and ethnic groups fully understand the implications and potential benefits of participating in the research.

Some notable genomic studies on diverse populations: 

1.  1000 Genomes Project: This international collaboration aimed to create a comprehensive catalog of human genetic variation by sequencing the genomes of individuals from different populations around the world.
2. HapMap Project: This project aimed to create a map of common genetic variations in human populations by genotyping samples from different populations.
3.  Genographic Project: This project aimed to trace the migratory history of human populations by analyzing DNA samples from individuals around the world.
4. African Genome Variation Project: This project aimed to study the genetic diversity of African populations by sequencing the genomes of individuals from across the continent.
5. Indian Genome Variation Project: This project aimed to study the genetic diversity of Indian populations by genotyping samples from different caste and tribal groups.
6. All of Us Research Program: This is a large-scale research program launched by the National Institutes of Health (NIH) in the United States, with the goal of collecting health information and DNA samples from one million or more people in the United States to improve health outcomes and precision medicine.
7. Human Heredity and Health in Africa (H3Africa): This is a collaborative research initiative launched by the NIH and the African Society of Human Genetics, with the goal of conducting genomic research in Africa to address health disparities and promote precision medicine.
8. Global Alliance for Genomics and Health: This international collaboration aims to promote responsible data sharing and collaboration in genomic research, with a focus on improving health outcomes for diverse populations.

These are just a few examples of the many genomic studies that have been conducted on diverse populations. As genomics research continues to grow, we can expect to see even more studies aimed at understanding the genetic diversity and ancestry of human populations, as well as the genetic basis of human disease.

Are you concerned that people could find genetic information unique to you if you donate cells? Learn more about the protections and risks of identifying or de-identifying data through genomic databases: 

Health Information Privacy HHS.gov

Also, learn about the following: 

The Promoting Equity in Stem Cell Genomics Survey, a  published research study evaluating diverse participants' knowledge and attitudes to stem cells,  biobanking, related technologies, and issues, including privacy concerns 

It is important to note that protecting the privacy and security of genomic data is a major concern for individuals who choose to participate in genomics research. Genetic information is unique to each individual and can reveal sensitive information about one's health and ancestry. There are several measures that can be taken to protect the privacy and security of genomic data, including de-identifying the data and strict data access controls.

De-identifying data involves removing personal information such as name, address, and date of birth from the genomic data. This makes it much more difficult to identify an individual based on their genomic data. However, it is not a foolproof method as it is still possible to re-identify individuals by combining de-identified genomic data with other publicly available information.

Another important measure is to have strict data access controls in place, which limit who can access the genomic data and for what purposes. This can include requiring that researchers applying to access the data provide a detailed research proposal, and that the data will only be used for specific research purposes. It's also important to have informed consent process that fully inform the individuals about the protection of their data, the risks, and benefits of participating in the research, and their rights to withdraw from the study at any time.

In summary, protecting the privacy and security of genomic data is a major concern for individuals who choose to participate in genomics research. Measures such as de-identifying data and strict data access controls can help to protect privacy, but it's important to have a comprehensive approach to protect individuals' personal data and to fully inform them of the risks and benefits of participating in the research.

Building trust within ethnically diverse communities can help promote equity in stem cell genomics. 

The Promoting Equity in Stem Cell Genomics Survey a  published research study evaluated diverse participants' knowledge and attitudes to stem cells,  biobanking, related technologies, and issues.

Building trust within ethnically diverse communities is crucial in promoting equity in stem cell genomics research. Trust is essential to increase participation and representation of underrepresented minorities in stem cell genomics research and ensure that stem cell research's potential benefits are accessible to all populations. Here are some strategies that can be used to build trust within ethnically diverse communities:

· Community engagement and education: Community engagement and education programs can help to increase awareness and understanding about stem cell genomics research among diverse populations. This can be done through community meetings, workshops, and other events that provide information about the potential benefits of stem cell research and biobanking.

· Collaboration with community leaders and organizations: Collaboration with community leaders and organizations can help to establish relationships of trust and mutual respect between researchers and the community. Community leaders and organizations can help to engage and educate their communities about stem cell genomics research and to recruit participants for research studies.

· Cultural sensitivity and inclusion: Cultural sensitivity and inclusion are essential to ensure that the informed consent process for stem cell genomics research is culturally appropriate and inclusive. This includes ensuring that the language used in the consent process is accessible and understandable, and that the process respects cultural beliefs and practices.

· Transparency and open communication: Transparency and open communication are important to building trust between researchers and the community. This includes providing clear and accurate information about the research and its goals, being responsive to community concerns, and being transparent about using data and samples.

· Addressing historical mistreatment:  Addressing historical mistreatment and exploitation of certain groups by the scientific community is important to build trust. This includes acknowledging past wrongs, and taking steps to ensure that such practices are not repeated in the present and the future.

It's important to note that building trust within ethnically diverse communities is a continuous process that requires ongoing engagement and efforts from researchers, community leaders and organizations. 

Building trust within ethnically diverse communities can help promote equity in stem cell genomics. Ethnically tailored recruitment materials and informed consent are parts of strategies to combat disparities in health care, global health, and pharmacogenomics research.

Learn more about The Promoting Equity in Stem Cell Genomics Survey, a  published research study that evaluated diverse participants' knowledge and attitudes to stem cells,  biobanking, pharmacogenomics, health disparities, global health, and related ethical, legal, and social implications.

 Ethnically tailored recruitment materials and informed consent are important strategies to combat disparities in health care, global health, and pharmacogenomics research. They help to ensure that diverse populations are aware of and understand the opportunities and benefits of participating in research and that they can make informed decisions about their participation.

Ethnically tailored recruitment materials are designed to be culturally appropriate and accessible to diverse populations. This includes using language and imagery that is familiar and relevant to the target population and presenting information in a way that is easy to understand.

Informed consent is the process of informing participants about a research study, including its purpose, procedures, potential benefits, risks, and alternatives, and obtaining their agreement to participate. Tailoring the informed consent process to be culturally appropriate and inclusive is important to ensure that diverse populations fully understand the implications and potential benefits of participating in the research. This includes using language and imagery that is familiar and relevant to the target population and respecting cultural beliefs and practices.

Additionally, involving community leaders, organizations, and representatives from the target population in designing and implementing recruitment materials and informed consent processes can help ensure their cultural sensitivity and inclusivity.

In summary, ethnically tailored recruitment materials and informed consent are important strategies to combat disparities in health care, global health, and pharmacogenomics research. These strategies increase awareness and understanding among diverse populations and ensure they can make informed decisions about their participation in research.